Earlier this October, the 10th Australasian Viral Hepatitis Conference was held on the Gold Coast. It was the first of these occasions I’ve attended and it was a privilege. A seemingly endless stream of influential personages passed by the mike over the three days, representing every interest group in the sector.
Of course, there was plenty of talk of Hep B, A, even of Hep E, but the star, front and centre, was Hep C.
And of course, that noble aspiration on everybody’s minds at the moment: elimination. Again there was that general air of excitement – the same one present on World Hepatitis Day, but stronger this time, more assured. More people have got the message and are prepared to mount the bandwagon. Of course a few conscientious scientists made the point (as I did here a few posts back) that in its strictest epidemiological sense ‘elimination’ might not be the precise word for what is being attempted – but never mind that. There were torrents of ideas as to how we might drill down into Hep C positive populations that have yet to see the light of treatment.
There was even a T-shirt. By Reg Mombassa, no less. Though the conceptual link with liver disease is difficult to discern.,..
And if you doubt me regarding the atmosphere of hope and determination, check this out:
I think, if I didn’t know I was at a health conference, I could be forgiven for mistaking it for some kind of spiritual convergence. And yes, they are all wearing the t-shirt pictured above.
It was genuinely inspiring. Everyone seemed of the one mind and the information flowed freely. I’d been told that at previous conventions there was a certain divide between the interest groups. Researchers tended to have their own cabal, as did the medical practitioners, the advocacy groups, and the peer-based action groups (like HRVic). But I noticed none of that here, Thankfully, everyone seemed to be marching to the one tune.
I had scores of conversations with individuals of every possible stripe: professors, NSP workers, nurse-practitioners, statisticians and even the guy who services Fibroscan devices in Australia. To various extents all had drunk the Kool-Aid.
My favourite, as regards intermingling, was a conversation I had with a rep from one of the major Hep C drug companies during the conference dinner on South Stradbroke Island. She was tremendously excited about meeting, not just me, but a number of people who had been cured by the drugs she spruiks (or at least deals with in a white-collar setting). She explained that she had never had actual contact with the ultimate beneficiaries of the products she worked with and that it was, well, amazing to meet them in the real world.
Of course, my excitement over all this camaraderie was tempered by the opinions of a few old heads who informed me, with quiet certainty, that once everyone got home, old divisions would reassert themselves, and that the mutual co-operation and respect so visible at the conference would evaporate.
A shame, considering that close collaboration will be a massive, if not indispensable tool in eliminating Hep C. At HRVic we strongly believe that peer-to peer communication will be the most effective step in reaching the vast bulk of untreated people in Australia. Proper support in this role by the rest of the sector, and by policy, will be like a pair of seven league boots for us. PWID comprise the vast majority of those with Hep C in Australia, and, as a rule, PWIDs tend to trust other PWIDs over figures of authority. Therefore, if our peer outreach network is sufficiently expanded then the treatment gospel will spread that much faster.
I don’t want to linger too long on this topic, but let me just say that, once again, the people with ‘lived experience’ chosen to speak their stories were not representative of the critical PWID demographic. At World Hepatitis day, we had someone who contracted it via the tattoo needle. On the Gold Coast it was a gay man who contracted it via anal sex with an HIV co-infected partner (a viable but somewhat rare mode of transmission). Also, there was a certain tendency to assume that those who contracted Hep C by shooting up drugs were the forgivable victims of a, to quote, ‘wild impulse of youth’ – and no longer active users.
As I’ve said before, we’re not going to be able to treat (let alone find) someone we can’t look in the face. Societal stigma is without doubt the hurdle it is said to be, but the institutional stigma revealed by the choice of these speakers, at events which are themselves calling for a war on stigma, is somewhat worrisome to say the least. What’s the quote? Oh Israel, look to thine own house.
Back to the drug company worker and her heartwarming experience. I can say categorically that she was not one of the nervous, guilty-looking greeters from Gilead Sciences who appeared to have been vertically impaled with rebar, and were certainly very concerned – not just about my photographing their signs -but in general.
Why so nervous? Why so concerned? Well, Gilead doesn’t have the shiniest reputation, having copped a great deal of criticism around their pricing strategies. But I don’t think it was that. I’d heard grumbling from reps of another drug company that Gilead (the most profitable and integral in the Hep C sector) was only a ‘silver’ sponsor of the conference, while the lesser three (Abbvie, MSD & BMS) had coughed up for either ‘gold’ or ‘silver’ sponsorships. But I don’t think it their uncomfortable demeanour had a lot to do with that either.
I suspect, rather, that they were in attendance at an eye-opening talk called Treating Epidemics with Low Cost Generics by Andrew Hill of Liverpool University.
His principal point was that if there were no patents on the new Hep C meds and if they were produced at cost price, there would be a good chance of treating the 185 million people infected worldwide.
As an example, he called on the history of HIV treatment. Prior to 2000, any sort of mass treatment of the disease which threatened to ‘depopulate’ Africa was simply not feasible – but in that year a turning point came when Yussef Hamied, billionaire chairman of Indian pharmaceuticals company Cipla, announced that his company could ‘manufacture HIV antiretroviorals for a dollar a day’ – a fraction of what was normally charged. The price is now in the region of 20c for the six million people in the developing world who are benefitting from HIV generics.
We already know that cut-price DAAs are available from countries like India and Bangladesh. I myself was on the verge of importing some, shortly before the drugs were placed on Australia’s PBS. But those prices – say, around AUD1,200 for a full treatment – are still very expensive for people in poorer countries. In Mongolia, where Hep C affects 10-15% of the population and viral hepatitis is the third largest killer after cancer and heart disease, a course of DAAs is available for USD100, but even this is beyond the range of most.
Hill described just how cheaply DAAs can be manufactured, something he claimed many governments often don’t understand (mentioning that Britain’s National Health pays GBP87 million per year for paracetamol at roughly five times ‘high street’ prices).
The raw drug substance (or API – Active Pharmaceutical Ingredient) is produced by the kilogram and if manufactured in high enough volumes the unit cost can be decreased by as much as 1000%. If sofosbuvir was produced in this way the price per tablet would be 1c.
Once other expenses are taken into account (I would assume this involves transforming the API into actual pills, then packaging and transporting them) a full course of sofosbuvir would cost USD62, daclatasvir USD14. Combined, the treatment would cost USD76 – compared with USD63,00o in the US.
But isn’t sof/dac exclusively used to treat genotype 3? You may well ask. Interestingly, Hill produced some stats comparing sof/dac and epclusa (Gilead’s much vaunted pan-genotypic treatment soon to be released in Australia). By the numbers it actually seems that sof/dac actually nudges out epclusa across the genotypes.
With half a million people dying annually from Hep C, Hill asked why drug companies don’t treat more people cheaply and make just as much money? It’s a good question. Of course there’s the classic response – that the research and development phase is very costly and must be reimbursed, but Gilead has made USD31.5 billion from DAAs thus far, USD18 billion of it profit. What’s more, the patent on sofosbuvir has fourteen years left to run.
In cases where the cost in human lives is too great, the concept of ‘compulsory licensing’ can come into play – whereby patents are overturned in the public interest, but the US hates this, considering it a threat to their way of doing business and not many countries have the courage to face off against them. (NB: the US invoked compulsory licensing themselves during the post Sept 11 anthrax scare.)
With prices remaining high, and no country in the world bar Australia providing treatment affordably to all its citizens, buyers clubs are thriving, according to Hill. He cited the examples of Russian and South East Asian buyers clubs, as well as Australia’s Fix Hep C which he said is ‘huge around the world’. The quality of these ‘de minimis’ imports from India and Bangladesh seems equal to that of the super-expensive branded products.
If there wasn’t already enough information in Hill’s speech to make anyone working for Gilead feel a little uncomfortable, he also made mention of an article in The Washington Post in July this year which revealed that the company had avoided USD10 billion in taxes – enough, Hill said, to treat every case of Hep C in the world.
The Golden Phaeton